| T O P I C R E V I E W |
| la_kevin |
Posted - 12/07/2007 : 21:41:44
I just wanted to share this post for people with the same problems I had.
If anyone can remember I had years of choking, electric "zaps", tingling, and weird electric sensations as I'm falling asleep.
I saw my Neuro again for a second visit. He is the top Neuro/Sleep specialist in my area, cool as hell too. He agreed that his initial diagnosis of Sleep Apnea was incorrect, and he apologized.
He listened to me some more and asked me loads of questions and his diagnosis is "Sleep Myoclonus", with a hint of Hypnagogic Hallucinations. I was worried I had something that was going to kill me in my sleep. He said absolutely not and assured me it was a benign symptom that is more common than people think. So I asked him if I had a brain injury or something. He told me that certain people are pre disposed to "sleep onset" anomalies.
So I asked him what kind of people, after reminding him that I have been diagnosed with a psychosomatic/ autonomic based pain syndrome.
He said it was interesting , because a lot of patients he sees with Fibromyalgia have sleep problems. It was strange because he never heard of TMS but agreed that Fibromyalgia is completely psychosomatic or Autonomic. It was great to hear someone who is known in the highest circles in Los Angeles to admit that it is a definite mind/body connection.
So anyways, I said, "So back to my Myoclonus, what is the cause of it"
Drumroll...................He said......"Stress" LMAO Well that and unresolved anxiety or stimulus before sleep.
He gave me three options to treat it.
1)Benzos...which he agreed are not for me as I had a nightmare experience the last time.
2) Naturally...exercise,meditation,relaxation stuff.
3) DO nothing
So I chose the natural. He suggested swimming. That was cool with me because that's my favorite thing and I needed to get back to swimming anyways. So this week I have had no Sleep Myoclonus. I remember swimming had this side effect, now it's confirmed.
But just thinking about it is odd. Once again it was a problem with my Nervous System malfunctioning. Serious feeling....had me thinking I was dying..... but benign in nature. So it seems to go back to the mind when all is said and done.
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"It's not 100% belief that's required, but 100% commitment." Armchairlinguist(?) |
| 6 L A T E S T R E P L I E S (Newest First) |
| lidge |
Posted - 12/08/2007 : 19:51:27
Kevin-
I'm not saying the REM sleep link is true or false as far as fibro. I just mentioned it because your doctor's assertion that he sees lots of patients with fibro having sleep disorders is nothing novel. Whether it is true or false, for years fibromyalgics have been treated with the assumption the pain stems from lack of restful sleep.
I suspect people with fibro are not treated by addressing the sleep aspect in 2007 because there is no money to be made there. Instead, drugs like Cymbalta are given because the manufacturer claims that it treats neuropathies as well as depression. It is also a backdoor way for doctors to get people to take antidepressants when they may otherwise be unwilling. There are no shortage of doctors that chalk up fibromyalgia to depression.
Of course now the drug du jour for fibro is Lyrica - pushed on TV endlessly. I always have to laugh when I see the commercial for it - "may cause muscle aches" - wow just what someone with fibro needs!
Alot of this goes back to what Sarno says about doctors creating health epidemics. When drugs like Nexium came out I'm sure the numbers of people with reflux soared. Same thing with Cymbalta, Lyrica. I think Sarno underestimates the influence of drug companies in creating the "pain" epidemic. As usual it's all about the money.
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| armchairlinguist |
Posted - 12/08/2007 : 18:30:29
Exercise is almost always a big help with sleep, in my experience. I sleep better if I exercise regularly -- or even if I exercise one day, I sleep better. Glad to hear it seems to be helping for you.
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It's not 100% belief that's required, but 100% commitment. |
| la_kevin |
Posted - 12/08/2007 : 17:11:49
Yes, I think him telling me it was benign alleviated the fear. I don't however,think that lack of restful sleep was the case with me. I sleep fine once I fall asleep. In fact I sleep better than most. Myoclonus is a "sleep onset" disorder mostly. Having it's worst effect before or during the "falling" phase and right after or right before.
I guess some Doc's think that Fibro may be caused by the lack of restful sleep like you said, but it doesn't make sense to me.
For starters, millions of people have sleep apnea, REM sleep problems, etc. But their main complaint isn't chronic pain from what I have read. It's heart troubles, weight problems, fatigue, circulation problems. On the other hand, many people with chronic pain, fibro, TMS, anxiety, muscle syndromes....complain of bad sleep. So I think it's the Nervous System causing wakeful sleep, which is a symptom of a larger problem, not the cause. In other words the reverse of what you stated. Hope I made sense with that I'm tired.
If they found out that Fibro was linked to bad sleep, then I think in 2007, Fibro people would be treated for REM sleep disruptions, that's my theory. I just don't see the evidence and duplicable data to confirm that the lack of sleep is "the cause".
At least in my case, I think it's just the usual Autonomic Nervous System out of whack. I could sleep for 10 hours straight with great dreams and not wake once, but still have the same level of pain upon waking. Like I said, once I''m asleep I'm fine. I guess I'll read the studies that link Fibro like stuff to bad sleep, but I remain skeptical. My initial feelings are based on what I presently know and have experienced or read.
If the studies you talk about suggest a sleep connection, then wouldn't we be seeking better sleep. And people with "TMS" would fall into that category too? It's just weird to adapt to the fact that I spent years thinking it was "physical", then had to learn it was most likely psychological, and now I'm hearing it's SLEEP? Sorry but it's all too much for me to grasp sometimes.
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"It's not 100% belief that's required, but 100% commitment." Armchairlinguist(?) |
| lidge |
Posted - 12/08/2007 : 11:50:40
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So I asked him what kind of people, after reminding him that I have been diagnosed with a psychosomatic/ autonomic based pain syndrome.
He said it was interesting , because a lot of patients he sees with Fibromyalgia have sleep problems. It was strange because he never heard of TMS but agreed that Fibromyalgia is completely psychosomatic or Autonomic. It was great to hear someone who is known in the highest circles in Los Angeles to admit that it is a definite mind/body connection.
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Kevin- the doctor's theory about sleep and fibro is the standard accepted theory by rheumatologists as well. But they believe the mechanism is that lack of refreshing (REM) sleep causes the muscles to not rest and therefore be in pain. The standard treatment for YEARS has been a low dose tricyclic antidepressant to encourage restful sleep - thinking psychological has nothing to do with the standard therapy.
This is very different I think than Sarno and his beliefs in repressed emotions etc. I think he would dismiss lack of REM sleep as the primary cause of fibro.
BTW, I'm so glad you are doing better Kevin! Its like night and day from a few weeks ago! Do you think that the doctor putting your worries about something killing you in your sleep "to bed" had something to do with your quick recovery?
Feeling better after being told a dreaded problem is "benign" is very much in keeping with TMS. |
| mk6283 |
Posted - 12/08/2007 : 09:40:36
Kevin, when I was going through my 12-month roller-coaster of symptom substitution, I experienced exaggerated sleep myoclonus as well, often associated with odd sensory sensations as you describe. I was also simultaneously dealing with diffuse fasciculations throughout the day. Once I had ruled-out all the scary diagnoses -- I was left with "benign fasciculation syndrome" and "benign sleep myoclonus." Needless to say I was angry at myself -- I knew from the beginning that TMS was the cause of my symptoms, but the doctor inside me just wouldn't allow me to accept it so quickly. I finally did accept it as such and the symptoms disappeared much like the other TMS equivalents I have experienced.
As you mention, these symptoms/syndromes are very common and I imagine that the so-called "restless leg syndrome" that is spreading in epidemic like proportions is not far off from these and very likely a TMS equivalent in its own right. Interestingly, Dr. Sarno makes no mention of benign fasciculations/myoclonus/tremors anywhere in his books, yet I find these to be some of the more dramatic presentations of the mindbody syndrome. Why? Because the symptom transitions are so quick and obvious that when I think back at it now I laugh. Once you realize that a particular twitch/jerk is benign and harmless, almost immediately another one will pop up in a different location. I have also seen that many/most of the people dealing with these conditions share the "prerequisite" TMS emotional/personality criteria.
I have found personally that the symptoms you describe can be treated very effectively with TMS techniques. However, I need to mention that these symptoms can be the feature of more ominous neurological diagnoses and a neurologist MUST give you the "stress" diagnosis before you can proceed with the safety and confidence you need to tackle them most appropriately as a TMS equivalent. Good luck.
Best,
MK |
| koukla |
Posted - 12/08/2007 : 08:13:29
I'm so happy you found a natural solution. I have noticed that my leg makes this jerking motion and twitches as I fall asleep sometimes. It is probably related to the stress now that I think about it. I find that I sleep better when I exercise regularly because I think it makes me more tired--and swimming is great exercise. |
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